Down The Rabbit Hole & Back: MaiTaiTom’s True Near-Death Saga

5Down The Rabbit Hole & Back:  MaiTaiTom’s True Near-Death Saga

Many of my friends who subscribe to this website know my 2010 Hospital Journey To Hell & Back all too well (they lived this story through emails, phone calls and visits).  I was admitted to the Huntington Hospital in Pasadena on September 11, 2010, and didn’t see my home again until Christmas Eve, and although I wouldn’t want to relive this adventure, it was, as Mr. Spock would say, “Fascinating.” 

I thought I would put my “near death” story out there (hey, misery loves company).

Unbeknownst to me, when I was admitted to the hospital that Saturday afternoon, I was headed to the literal Death Valley.  I believe my story can provide some insight for others who might eventually find themselves in a similar unenviable position I found myself in.  Fortunately (for you) I was unconscious during much of that 3 1/2 month hospital stay, so obviously this will not be a day-by-day recount (but Tracy did leave an email trail to help out some of my memory “gaps”).

It also seems that Tracy has some delightful photos of me to go with the story (as you can see by the cover photo, I doubt GQ will be giving me a call soon).  Although I nearly died, the story does have a lot of funny moments (and a happy ending), so enjoy.

Prelude To (Near) Death:

On September 10, 2010 (a Friday), I was feeling incredibly sluggish (unusual for my hyperactive self), and my blood pressure was unusually low, so my doctor recommended (a recommendation that likely saved my life) I take a trip to the emergency room at our local hospital so they could run a few tests and be evaluated the same day.  Never one to resist a day off of work, I followed the doctor’s orders.

Once there, sitting among knifing victims, kids hacking up a lung or two and people who looked like they were halfway to the morgue already, I waited (and waited…and waited) in the emergency room for a few hours until it was eventually and mercifully my turn.

My name was finally called, they ran a battery of tests and, after a couple of hours, a doctor came in and said everything looked “fine,” and I could head on home.

“Great,” I thought. I was still feeling tired, but nothing else was bothering me except for a little pain in my lower back.

Before leaving, I asked them to take an x-ray of my lower back area. I had fallen a couple of weeks before (a tale of a wayward dog running into the darkness, and his old-man owner tripping and falling head first into the street in an attempt to save our new corgi from an oncoming automobile). The corgi lived (they look so innocent, don’t they?)…

IMG_1734…but I got banged up pretty good.

Two weeks later I was still hurting.

The doctor came back in and said, “After looking at the X-ray, it seems you have the beginning stages of pneumonia.”  I was going to ask if I had walking pneumonia since I had walked into the room, but this doctor didn’t smile very much, so I passed.

We were scheduled to leave for New York City the following Thursday, so this diagnosis did not bode well for travel. I was given a half-hour IV and sent home with a prescription.

By the time I reached the parking lot I had the shivers.  By 2 a.m., my temperature was at 101, and I was more than a tad bit concerned…and hot!

The following day, my doctor who has treated me for my psoriatic/rheumatoid arthritis since the early 1980s (and who we could not live without) called and said (I am not quoting, but you could hear it in her voice), “Tom, you idiot, get back to the hospital. You need to be admitted…right now!”   Many people have said that I should be “admitted” in the past, but that was for a different type of institution.

My arthritis doctor was worried because I was on Enbrel, a miracle drug for my arthritis (I was basically in remission for 12 years), but also one that suppresses your immune system (not good when you have pneumonia).  It’s the same drug that Phil Mickelson does commercials for on television.  Unfortunately, as good as it was for my arthritis, it did not help my golf game…

IMG_0088…nor my golf attire, although it was slightly better than my friend, Kim.

Thanks to some phone calls from a couple of my other doctors (I like to keep physicians throughout Southern California employed), I was moved to first in line in the ER when I arrived, and when I saw the nurses reaction to my oxygen level test (SAT rate under 80), I knew I would not be sipping martinis on the patio that evening.

IMG_0095It was on to a hospital room for me, and they started me on an IV drip immediately.  My temperature was back around normal, and I didn’t really feel all that badly. I figured I could be out of there in a few days and still have an outside chance of making NYC.  It seems my medical knowledge was closer to Dr. J than Dr. Kildare (dating myself).

However, Tracy’s email to friends the day after I was admitted was not quite so optimistic. “Pretty scared. This could have a bad outcome.”  I’m glad I didn’t read these until after I was out.

IMG_0096During the first week, I didn’t seem to be getting any better. The team of doctors expanded to include a pulmonologist and an infectious disease doctor, because they couldn’t figure out what was wrong with me.  My pulmonologist asked if he could take some fluid out of my lungs. “Sure, why not?”

Sticking a large needle into my back to extract the fluid, the result was a bottle full of liquid that looked suspiciously similar to a large stein of beer carried by a Munich Oktoberfest waitress.  “Prost!”

Feeling slightly better, I thought that this bedside surgery might do the trick, and I would be on my way to recovery.  If I just rested, I could beat this thing, I believed.  Then, for the next couple of days I saw something that could be the reason our nation is going down the drain…daytime television.

There is no medical proof to substantiate my theory, but I believe my quick progression downhill during the following week was directly attributed to enduring three minutes of The Jerry Springer Show; a program that could hasten anyone’s demise. Oh, the humanity!!!!!

The one show I did like was The Doctors, perhaps because I was surrounded by so many of them each day.

By now, Tracy had taken a leave from her work. She was spending most every waking minute with me and chatting with the army of doctors and nurses who were coming into my room. By now, I was conversing just a little bit more than Marcel Marceau, so Tracy, our friend Mary and my sister Deanna became my hospital advocates.  Those three people eventually helped save my life (damn, I spoiled the ending).

I also had countless friends visit me for the next few months, some who made treks from as far as San Francisco, San Diego, Orange County and even Phoenix to make me feel better. It was great to see them, but I was a pretty worthless talking companion, yet they kept coming to keep me company.  It was the first time for many of my long-time friends to actually witness me quiet.

I was beginning to feel worse each day.  Within about a week, as summer turned to fall, I would be fighting for my life for the first time. Things were not looking particularly good, however I didn’t know at the time how bad the situation had really gotten. Suddenly, my predicament had turned into a bad episode of House.

One of Tracy’s emails said, “Hard to believe we are on Day 8.”   Little did she know that we’d have 97 more before I got out of here.

It Won’t Be Lung Now, Going Down The Tubes, Bedside UnManners, Not Dead Yet, Team Tom, Is That Football or Pinball, Did I Kill Any One, My First Try at Physical Therapy and Who Are You?

Less than two weeks into my hospital “visit,” I was knocking on death’s door, although I really didn’t have enough strength to reach the door, much less knock. My doctors thought the best course of action would be to have a biopsy taken of my lungs, which were now filled with as much fluid as Lake Tahoe.

I tried sending out emails, but looking at them, they made little sense, except for one I sent out after a particularly bad night.  “Last night slept with two pipes in my neck…Literally, I felt like I was choking to death.”

According to Tracy’s notes on Day 13, “In critical condition, unconscious, on vent, fever and low blood pressure…he looked terrible.”  Tracy usually only says that last line when I wear my worn-out San Diego State t-shirts.  She added, “and the doctors are more concerned than usual.”

Since I was slipping in and out of consciousness, it was up to Tracy to make all the big decisions.  Of course, even when I am conscious Tracy makes all the decisions, so a slight vegetative state on my part didn’t really matter.

A surgeon was called in (who I was told had the bedside manners of Attila The Hun and House), and after the biopsy, he told Tracy that, “His lungs are worse than patients who need a transplant.”  His official diagnosis was “Intersitual pneumonitis,” which equates to something like inflammation of the lining of the lungs.  The blood clots in my legs weren’t helping either.

It was at this time, Tracy wrote an email to many of our friends and relatives: “I’m like a deer in the headlights when the doctors show, and I’m really good at weeping (must be because I’m Irish).”

Reading that now, I feel like Sally Field. “She loves me. She really loves me!”

Obviously at this point, neither my loved ones nor myself were breathing easily.  But hey, it beat having John Cleese working as my orderly, having someone hit me in the head and shoving my carcass into a wheelbarrow. “I’m not dead yet. I’m getting better!”

One of the reasons I survived this first emergency was the administration of enough steroids to make Barry Bonds blush. Tracy told me a couple of months later that for a while I was given massive amounts of steroids a couple of times (or enough to hit 200 home runs a season).  My first comment was, “Did I kill anyone?”

4This explains a lot about my attitude during the months of October and early November. In early October I was transferred from CCU (Critical Care Unit) to DOU (Direct Observation Unit).  By the time my stay at the hospital was complete, I had been in more beds and rooms than a $100 hooker.

I was pretty much a mess at this time. One day Tracy turned on a pro football game. With the mass amount of steroids in my body, the game looked and sounded like a pinball machine on acid. The one positive is that I was so sick I didn’t have to look at any Charger games and didn’t know until much later in the year how bad they were.

Steroids and a “nuclear bomb of antibiotics” also had another not-so-pleasant effect. At night, when everyone was gone, and I lay in my room, my thoughts were unsettling, to say the least. I would seemingly go nights without sleeping.

Coupled with a feeding tube, when I did sleep, my dreams were more like nightmares. They were downright scary. The only thing missing from these bizarre stories emanating from my brain was an introduction by Rod Serling.  “There’s the signpost up ahead, you’ve reached the Tom Crazy Zone.”

The feeding tube was stuck down my throat via my nose (a process that still gives me chills) because I now had no appetite, which pleased no one except my Jenny Craig representative. Nothing sounded good to me, and the hospital food that had been fine when I was first admitted, now repulsed me more than a plate of pickles (a food product that gives me the shivers).  Tracy would go out and get me some cantaloupe and grapes (about the only things that tasted good), and between those and root beer floats, that was my diet.

My massive array of doctors and specialists (dubbed Team Tom) now consisted of a pulmonologist, a cardiologist, an infectious disease specialist, a rheumatologist (midway through my stay, to add insult to injury, I started having stress-induced gout attacks), a dietitian and a nephrologist (a position I thought was held by someone studying ancient Egyptian artifacts, but instead was my kidney specialist).

Besides my specialists, Team Tom also had “The Advocates.”   Tracy, Mary and Deanna were there for every decision that needed to be made during this time.  Mary stayed with Tracy for a week or two at a time, giving Tracy a break from the humdrum existence of hospital living. By the time I left the hospital, Mary was dubbed by many of the nurses “my second wife.”  I felt like I was in an episode of Big Love (without the sex, but with great foot rubs).

Speaking of Mary, in early October her son was to be married.  A few days before the nuptials, as she sat in the room with Tracy, a hospital staffer stopped by the room and slapped a huge “Quarantine” sign on my door.  There was no explanation, and the person walked away.  Tracy, Mary and I were now in our own private Gitmo without the water boarding.

Tracy was scared to death that Mary would miss her son’s wedding. Mary was worried. Mary’s husband, Kim, was worried.  I was happy because now I would get even more foot rubs.  As Mark McGwire might say, “Steroids is bad.”

As it turned out, I know had something contagious that I picked up in the hospital, so they just had to start wearing gloves and cute, yellow gowns to visit me. At the same time, stock prices of Purell went through the roof.

One day, the nurses put me in a chair to sit for a while.  Unfortunately, I was so weak, I was unable to get up out of the chair back to get back in bed.

They brought in a contraption that I was strapped into, and soon (speaking of Sally Field),  I was high above my bed hovering like The Flying Nun as they tried to lower me back down.

sally field flying nun hatI can still hear my late friend, Bob, laughing as I flailed around like a seal out of water (hey, the yucks come first in our group).  It was so pathetic, even I got a chuckle out of my predicament.

I was in bed so much that I started getting nasty bed sores on my butt, so the nurses had to come in and take Polaroid photos occasionally to make sure it hadn’t gotten worse. I remember commenting to one nurse, ”I better not see those photos on Facebook.”

During this time, my long time friends Craig and Bob would spend an entire day in my room to give Tracy a break, even though I couldn’t converse with them.  My buddy Jeff drove from Phoenix all the way to my hospital to watch one half of a Monday Night Football game and then drove back.  Good friends like Burt and Ed, who lived nearby, would just drop in periodically to give me sports scores or the latest news of the day.  And my business partner and friend, Tim, held down the fort for three and a half months while I slept the days away (I think he believed I did that when I wasn’t sick, too).

3Meanwhile, Team Tom tried to decipher why their patient was so ill.  Valley Fever?  Legionnaires Disease?  Lupus?  TB?  Rheumatic Lung?  A reaction to my arthritis medicine Enbrel?  Viral Pneumonia?  Too many martinis?   All were put out on the table, yet none were deemed the cause of demise. It was at this point they started looking at my heart (which had a mitral valve regurgitation for years) as a culprit.

Although I still felt like crap, at one point the doctors thought I was getting better (either that or they were getting tired of my lame jokes).  One day, with the help of a physical therapist, I actually walked three steps. The steroids seemed to be working, even though their side effects were making me crazier than Charlie Sheen at a crack party.

My kidneys, after a couple of rounds of dialysis (more on that later), were making a slight comeback. My breathing seemed to be better, and although I was still eating like a Super Model (without the binging and purging thing), everyone was cautiously optimistic that, just like Mary Tyler Moore, I was going to make it after all (I had no hat to throw in the air, not that I could have thrown one anyway).

They were so confident that on October 22, I was sent to physical therapy in an attempt to get me strong enough to get back home. I don’t remember much about those few days, but in hindsight my journey to PT was a huge mistake, although I was out long enough to take a Halloween photo (that I have no memory of).

5 (1)I do remember trying to take a few steps in a walker.  That didn’t go so well.  I had a better chance of making love to Shania Twain than getting to the bathroom.  Speaking of which, I don’t know how much nurses are paid, but it is not enough.  Not going into details (I’m sure you can guess), most of the nurses I had in those 3 ½ months were nothing short of angels.  I had one motto I adhered to during my entire stay, “Do not get mad at a nurse.”  I never did.  But I digress.

In physical therapy, by the end of the first two days, I was a physical and mental mess. I couldn’t concentrate, didn’t feel like eating and my body felt like it had gone 15 rounds with Floyd Mayweather.

On Day Three of physical therapy, I only remember one thing; I took my first shower since the morning of September 11. I remember it felt good, but I was physically spent after that.  Soon thereafter, Tom’s second trip down the rabbit hole began. When Tracy arrived later in the afternoon, I was laying in bed. She said (according to Tracy), “Hi, how are you?”

There was no response from me, because I was basically not there. Tracy was used to that type of behavior after 16 years of marriage, but she could tell this was worse than usual.  I had no idea who she was, where I was or that the Padres had blown the division just a few weeks before (a tell-tale sign I was very ill).  After Tracy demanded to see a doctor (advocacy in action), I was immediately sent back to CCU.

The next morning Team Tom was back in full action, and they were concerned. From what Tracy has told me, the looks on the doctors and nurses faces told her that some of them thought I might be visiting that big San Diego State Aztec in the sky in the not-too-distant future.  As Tracy wrote the following day…”the prognosis is not good.”  Geez, I hope I make it.

Going Downhill Fast, Do I Get To Go To The Rock and Roll Hall Of Fame Before Surgery, Mary Weeps, Ultimate Decision, Pig Tale, Sleeping “Not So” Beauty, Are You Julie, The Thin Man and Gosh Your Hair Looks Good

Laying in CCU the day following my PT “episode,” even in a drug-induced haze I started to take grasp of the notion that this situation was even more dire than I had previously thought. I was truly scared.

When my pulmonologist (who is a terrific guy that visited me virtually every day I was in the hospital) came in the room the following morning, I asked him point blank, “Am I going to die?” He looked me straight in the eye and said, “Tom, you’re not going to die.”

He was very convincing. I know now that I will never play poker with him, because he has since told me that he and the other doctors thought on more than one occasion I might not make it.

Loaded up on steroids and more antibiotics, my thoughts turned from despair to even more despair. One has crazy thoughts when loaded up on ‘roids. I would get really sad in the middle of the night thinking that my tabby cat would not recognize me if and when I got home.

7I had a dream that I had eaten a bowl of chicken noodle soup, but that the last noodle was stuck in my throat. After what seemed like a never-ending nightmare, I awoke in a sweat and realized that the “piece of chicken noodle soup” was actually my feeding tube sticking down my throat. There were nights I thought I was certifiably crazy. Sometimes, nurses would come in and chat with me for about 15 or 20 minutes in the middle of the night to make me feel more at ease.

Every day starting at 5 a.m. (even if I could sleep, hospital hours are not conducive to that activity), there were more X-rays, more blood tests, more breathing tests and a lot more questions than answers. As October became November, my condition was worsening every day, and it was looking sort of bleak.

I drifted in and out of reality, but one day I do remember was Election Day. In the California governor’s race, Jerry Brown ran those commercials showing Meg Whitman’s nose grow like Pinocchio, and I swear that commercial ran 100 times that day. Let me tell you, seeing Whitman’s nose grow while I was swimming in steroids was quite fascinating…and scary.

920x920I was cognizant of what was going on for a few more days, but I can’t remember a single thing. I knew I was headed in the wrong direction, and it was at this point I really thought I would never play the violin again (not that I ever did before, but I’ve always wanted to get that line in a trip report).

I then slipped even further (so I am told).  Although unconscious, I was not being the model patient.  On November 14, under the effect of the Michael Jackson drug (and fortunately not his doctor), I ripped the vent tube out of my throat and went after the dialysis line in my neck. Now that’s what I call venting!

By the time Tracy arrived early the next morning, I was in handcuffs and tied to the bed.  I don’t know how TMZ missed that photo op.

Shortly thereafter, all my organs started shutting down again.  My lungs were failing, which in turn was shutting down my kidneys, which in turn was shutting my liver down.  This did not bode well for survival.

One morning, Tracy and Mary walked into CCU into the middle of a heated argument between my cardiologist and infectious disease doctor in time to hear, “You have to do something now or he’s going to die.”  I was suddenly thrust in the middle of a made-for-TV tear-jerker on the Hallmark Channel.

Apparently, the only thing left to do was operate on my heart to repair the heart valve, and Tracy was told that she had a big decision to make. She was also told that I wouldn’t survive without the surgery and that I may not survive with the surgery anyway. Somewhere in my altered state, I must have thought, “Damn, they don’t even know what songs I want played at my funeral.”

The next question was where should I have the surgery? My cardiologist had suggested we try to have the operation done at the Cleveland Clinic in Ohio. “It’s the best in the world for what we need to do,” he said.  I have an aversion to Cleveland because The Rock And Roll Hall Of Fame has not inducted the Moody Blues, but since I was unconscious, it wasn’t my decision to make.

Tracy was told if they accepted me, they would transport me via air ambulance from California to Cleveland. Mary volunteered to come along. I hate small planes, but once again that darned unconscious thing precluded me from the decision-making process.

The Cleveland Clinic was faxed my records (medical…not Moody Blues…records), and they called back to say I was not a candidate for the mitral valve procedure they do there. Plus, they said I would probably be dead by the time we flew over Denver (not exactly their words).

When she heard Cleveland was out of the equation, Mary started to cry. Tracy went over to comfort her (as Mary had done for her so many times) and said something like, “Don’t worry, we’ll find a doctor to do the operation.  It will be ok.”

Mary replied, “It’s not that. I’m just glad I don’t have to get on that little airplane.”  Yes, we all have our priorities.  I only wish I could have been awake to share in that brief moment of laughter.

Next, Mary volunteered to take my records to Cedars Sinai in L.A. for review as they did the same procedure as they do at Cleveland. Mary arrived at Cedars during the lunch hour and asked for Dr. “So-and-So.”  The gentleman at the desk turned around and said, “He doesn’t work here anymore.”  Mary burst into tears (lots of crying in this story), and the doctor hurried over to her and said, “Now dear lady, don’t worry, I am Dr. S0-And-So. What can I do for you?”

After Mary explained the situation, the doctor immediately reviewed my medical records only to determine I was not a candidate for their program. Although, it is our suspicion that they thought I was a “goner,” and a death always hurts your hospital stats.

Finally, it was decided to have the operation at the hospital where I had now spent the past two months. Tracy decided against the House facsimile doing the operation, although we found out afterward he is a terrific surgeon. Instead she was given another choice, and that doctor came in on a Wednesday afternoon and said he would clear his schedule for the following morning. Tracy and Mary liked him a lot.

Once again, The Advocates sprang into action. After a couple of quick phone calls, Tracy gave the “ok” to have him open me up the next morning. Plus, she told me later, “he was handsome,” so perhaps she was already thinking of “life after Tom.”

Then she and Mary did the same thing I would have done in their situation…they went out for cocktails.  Hey, it was out of their hands. My other friends were searching through their papers at home to see who got my stereo equipment.

Before the operation, one other question had to be answered: “Do you want Tom to have a mechanical valve or a pig valve.”  For a brief moment, it looked like I was going to be guest starring in “Babe: Pig in the Tom.”  Tracy checked with a doctor friend of mine who said to leave that decision up to the surgeon, which she did.

Unbeknownst to everyone, my sister had talked with a few of the other doctors, and I don’t think anyone was putting money in Vegas on me to survive.  Even the Chargers had better odds than me. The next morning surgery began.

For the better part of four hours, my surgeon worked to help keep me alive and fix my heart.  When he saw Tracy after the operation, he told her that she didn’t need to get the life insurance policy out quite yet.  I had survived surgery.  And, even better, they didn’t need to put a mechanical or a pig valve in as they were able to do a repair (which they said should last for the rest of my life…which, of course, might only be a few more days).

Surgery was done the Thursday before Thanksgiving, and six days later I still lay unconscious. Doctors had tried to wake me up, but I was having nothing to do with that (I must have been pooped). Tracy was worried I was brain dead (something many of my friends have worried about for years).   Finally, on Thanksgiving morning I opened my eyes.

In the room was my sister and niece.   I didn’t recognize them.  Also in the room was my best friend who had driven out from Phoenix.  I didn’t recognize him.

When Tracy asked, “Who am I?” I smiled and said, “Hello, Julie.” Unfortunately, Julie happens to be the wife of a close friend, Craig.  I’m still trying to explain that one to Tracy…and Craig…and especially Julie.

Just when everyone thought I really did have brain damage, a gentleman walked in the room. I sat up in bed and said, “Hey Phil. How’s it going?” It so happened a client of mine was visiting family nearby and came to see over to see how I was doing. He didn’t know until I saw him a couple of months later how much his hospital visit actually meant to my recovery.

My buddy Jeff also brought us our traditional Thanksgiving “Cocktail In A Can” (a tradition since our college days).  I think I passed on the drink, as I was high enough.

IMG_0151For the next couple of days, my special angel nurse, Janet, was assigned to only me, monitoring everything I did and every move I made.  She told everyone not to bother her because I was hooked up to so many devices.

IMG_0149I have been shown a picture of the recovery room, and it looks like the bridge of the Starship Enterprise. At one point, I had a total of 19 tubes, pick lines and other devices stuck in my body. I wasn’t exactly the Six Million Dollar Man, but Tracy was worried that when we got the bill that it wouldn’t be too far off.

IMG_0147Over Thanksgiving weekend, I started my long road back to recovery. One thing I do remember is that everyone who walked into my room said virtually the same thing; “Tom, your hair looks great.”  That was surprising because I had not had a haircut since August, yet it still wasn’t overly long (foreshadowing alert).

I was pretty much in a daze for the last week. I had something called “Pump Head.”

Florence GroupKim and Mary had brought photos of many of our European adventures earlier in my hospitalization, so each day Tracy would put another one up in the room to see if I remembered where we had visited.  Every morning my pulmonologist would come in and give me three words to remember at the end of our visit.

I didn’t even know my birthday, phone number or address. At this time, I was just happy just to remember my name, but slowly I regained a semblance of my former memory.

A week later, I had progressed enough in ICU to be transferred to DOU, but I was so sad to leave Janet. She put her arms around me and said, “This is a good thing. It means you’re getting better.”  Just thinking about that still brings tears to my eyes.

While in DOU, Tracy brought in the iPad and showed me something quite fascinating from the Fodor’s Travel Board. “Tom, there are more than 400 posts wishing you well from your Fodor’s Travel Board.”

“Four Hundred,” I exclaimed. “I haven’t seen 400 responses to a post unless Sarah Palin’s name is in the title.” Tracy read many of them to me, and they meant a lot.

While in DOU, I realized I had an additional medical dilemma. Because I had been intubated so long, my teeth were now totally out of alignment. I had the over bite of a beaver, and I don’t mean Beaver Cleaver.  Outside of building a dam, my teeth were virtually useless.

I was already so skinny that donations were being sent to me by the Sally Struthers’ charitable foundation, so this was a terrible predicament. However, I was saved by a good friend.

She made a delicious Mandarin Orange jello mold that combined orange jello,  Mandarin oranges and Orange sherbet.  It was delicious, and, more importantly, I could eat it.  Coupled with my Mandarin Orange hot tea, I was speaking fluent Chinese by the end of the week.

After being in DOU for about a week, I was anxiously awaiting the day I would be transferred to Physical Therapy.  I was still incredibly weak, and in DOU I realized I was now completely unable to walk.  It’s amazing how much your body atrophies while being bed-ridden.  I was about as strong as a five-year-old.

On December 7, in the early evening, the head of physical therapy came into my room and said they would be taking me to PT within the next hour. As I was rolling toward my next destination, I made a vow that this would be the last gurney ride in this hospital.

That night, sitting in bed in PT, I said over and over again to myself, “Be strong! Be strong!” I went to sleep shortly thereafter, and for the first time in nearly three months, I slept soundly, and there were no nightmares. I hadn’t seen a light when I nearly died, but there was most certainly now a light at the end of the tunnel.

143, Who Is That Guy In The Mirror, Shakin’ All Over, No Small Potatoes, Food Glorious Food, I’m Walking Here, The Curious Case Of The Missing Butt, The Hair Cut, Bowl Mania, Graduation Day and Hey It’s Great To Be Back Home Again

Promptly at 5 a.m. a nurse arrived in my room. I was still in a sleep stupor when I heard her say “143.” Thinking she was taking my blood pressure, although I didn’t have a cuff on my arm (hey, I was in a stupor), I asked, “143 over what?”

“No,” she replied, “that’s your weight.”

Well, that news woke me up faster than a double espresso with an energy drink chaser. I hadn’t weighed 143 since high school, and I weighed about 190 before this fiasco started.

I thought back to the night before I went in for tests. After work, I came home and shot baskets as I did most every night. I made 89 out of 100 free throws to end the evening, and although I was kind of ticked off I didn’t make 90 (I am rather competitive, even with myself), I thought, “Not bad for an old man.”  Now, not even three months later, my fingers were too weak to open a pop-top on a can of root beer and shooting a basketball was only a distant memory.

Over the course of the last week in DOU, my appetite had returned thanks to a KFC commercial on television. I had Tracy pick me up some KFC mashed potatoes and gravy, and I devoured them as if I hadn’t eaten in a month. Wait a minute. I really hadn’t eaten much in the last month.

IMG_0155My teeth still sucked, but I knew if I was going to be able to perform PT and get healthy I had to eat.  A double helping of scrambled eggs, some oatmeal and yogurt started me off on Day 1.

A little after 8 a.m., my occupational therapist came in and said my nearly three-month break was over and it was time to get to work on my road to recovery. He got me into a wheelchair, and I wheeled over to the sink for my first attempt at “getting ready for the day.”

I looked in the mirror, and to be sure, it was quite shocking.  I had not looked in a mirror since the latter part of October (and that had been a shock), but now I was looking at the ultra-skinny face of someone I did not know.  On the other hand, my hair looked damned good.

IMG_0156My goal for the next hour was to wash myself, brush my teeth and get dressed. What used to take a few minutes took the entire hour. Reaching down to put my socks on was brutal. I thought I had a volt of electricity go through my arms.

Attempting to put my shirt on over my head was a comedy of errors. I thought at one point I would suffocate from having the shirt stuck over my face. After accomplishing the task at hand, I told the therapist, “That was (expletive) pathetic.”

He said, “Don’t worry. It will get better.”

There is not a lot of down time in PT. A half hour later, I was ready for my first attempt at “walking.”  With a little help, I got out of my wheelchair onto my walker (at least it didn’t have tennis balls on the bottom). I felt like I was 110 years old.  With the wheelchair following closely behind me, I was able to walk a grand total of seven steps before I collapsed.

“At this rate,” I told the PT specialist, “I should be walking fine by 2025.”  She laughed and told me not to worry. “All in good time,” she said.

There was another PT session where they stretched me out and then another occupational therapy session. This OT session concentrated on me putting different sized pegs in the correct slots. There was one major problem.  Due to the fact that I had been given enough steroids to fill the state of Texas, my hands now shook like the Waco Kid in Blazing Saddles. “Yeah, but I shoot with this hand,” he said as his hand and arm shook wildly up and down.

My OT was very patient with the shaking patient as I not-so-deftly put the pegs into the corresponding slots.  By the end of my morning session I was back in my wheelchair sitting in my room, and I was thinking that I might never get out of this place. I was rather depressed, but I did force down my lunch. At least food tasted better.

Tracy had finally gone back to work after spending most of her waking (and sometimes sleeping) hours in my plethora of hospital rooms. When she visited that night, she asked how the day had gone. I tried to put a positive spin on it and said, “It went ok,” although I was feeling a little low.

Anyone who knows me knows my competitive spirit, so that night I made another vow. I would never take fewer steps than the day before, and I would do each and every exercise asked of me.  It was now December 9, and I had been told I would probably be in PT for a month, which would get me home in January.  My goal was Christmas, although after the first day, I thought I might not be home until Christmas 2012.

As they decreased my steroid intake (I knew they had done that because I hadn’t felt like killing anyone for a week) I slept better and, more importantly, I was felt better. On Day Two, I walked 25 steps (in the walker). Day Three, I navigated 50 steps. Day Four it was 99 steps (yes, we measured every day). By the end of my first week in PT, I could navigate completely around the floor twice (about 500 steps) with no difficulty.  I could even dress myself in a reasonable time without looking like a complete klutz.  I was pretty pumped!!!

All my doctors visited me the first week over in PT, but one by one they said I wouldn’t be needing them to stop by anymore. It was bizarre, but all these people had gone through so much with me that I actually felt a little depressed they wouldn’t be coming by every day.  My god, I was going through “doctor withdrawal.”

Tracy had a morning off during that first week, and she stopped by to see my walking progression. This was the day I walked 99 steps. After I showed her my walking prowess, I asked, “How about that?”

“It’s great,” she answered, “but what happened to your butt?”

I reached back to feel my butt, and to my shock, it was gone. It was flatter than the world before Columbus. “Holy crap,” I said (no pun intended), “It’s gone!”

I no longer wanted to listen to the song, “Dancing Cheek to Cheek.” I thought they might bring back Leonard Nimoy for one last “In Search Of” specials. “Today we go in search of Tom’s butt.”

Although I still had no butt, you might have heard that my hair was still looking good, but some things have to come to an end. After a week of therapy and showers (damn those showers felt good), the woman who cuts my hair said she would come over to the hospital to make me more presentable when I entered the outside world again.

IMG_0163After she finished, Tracy and I tried to pay her and give her a Christmas tip, but she would have none of that. “This one is on the house. My best Christmas present is you’re still here with us.” I was kind of tired of crying in front of people, so I waited until everyone left my room that night to begin my blubbering.

Looking back, I cried more in this hospital stay than I have during any showing of The Sound Of Music (when Gretl shows Sister Maria her hurt finger, I lose it every time).

IMG_0165One task that was hard for me to perform for the first ten days of PT was trying to stand up on my own. The PTs swore they were not helping me when I would get up, but I always used them as a crutch to hold on to me as I arose not so gracefully into my walker.

One day after OT, it was time for me to climb back in bed. My wheelchair was about seven feet from the bed, and she said, “OK, get in.”

“Are you going to help me get up?” I asked.

“No.”

“Are you going to help me walk over there?”

“No, you can do this on your own.”

I guess I had just needed the confidence, because lo and behold, I stood up and walked over to my bed and plopped down. Those first steps taken without the aid of a person or walker will go down as one of the most exciting things I have ever done in my life.

One Saturday during December it was unusually hot, so Tracy put me in the wheelchair and whisked me through the hallways until I was sitting out in the glorious sunshine. It had been about 90 days since the last time I had felt the sun on my body, and I wanted to sit there all day. Tracy said risking melanoma might not be the most prudent course of action at this time, so after about 20 minutes we went back inside.  All in all, it was incredible to feel the warmth of the sun on my skin again.

Moving ahead, we are now at December 17, and I was walking a lot without the aid of a walker or a cane (which I never used in my recovery) and I was even dribbling a basketball in the hallway, much to the consternation of my sleeping (well, not anymore) neighbors. My PT came in and said, “Tom, you have made such a remarkable recovery, I am going to suggest we get you out of here by Christmas.”  And I thought getting slot cars as a kid was a great present.

For the next week, I was a PT and OT machine. Even when I wasn’t doing therapy I performed exercises, walked to the bathroom (oh what a godsend not to have to pee in my bed – sometimes literally – anymore) and anything else I could do to get stronger faster.

I really wanted to get out by December 23rd because San Diego State was playing in their first college football bowl game since Woodrow Wilson was president (Ok, it only seemed that long). I asked the head of PT if that was possible, and he said, “Sorry, but the good news is that you can go home on Christmas Eve.” Well, no big screen for the game, but knowing I would be home for Christmas trumped that minor disappointment.

Kim and Mary could have gone to the game in San Diego, but instead insisted they were going to drive up and watch the game with me in my hospital room on my crappy TV. I told them they were crazy, but they would not take “no” for an answer.

I was laying in bed about a half hour before kick-off when I heard loud music coming from down the hallway. Within a second, I knew what it was: The San Diego State Fight Song.

A couple of seconds later, there were Kim and Mary in the doorway blasting the fight song from a boom box and holding a sign that said, “Free The Maitai One!”

I laughed and said, “The nurses are going to be mad at you guys.”

Their response was, “What are they going to do, kick you out?” Touché!

IMG_3747Instead of being angry, the nurses brought in extra chairs for Kim, Mary, Tracy, my business partner, Kevin, and Susan, the creator of the Mandarin Jello Sherbet treat. San Diego State kicked Navy’s ass in the Poinsettia Bowl, we dined on delicious pizza (my teeth were making a small comeback) and all was right with the world.

P1040370Everyone left, and even though Kim and Mary were hosting hordes of family and friends for dinner on Christmas Eve, they stayed with Tracy to help me make my escape the following morning.

1Christmas Eve morning arrived, and already there was something different.  The nurses let me sleep in until 7 a.m. When I awoke, I was so excited. I was like a kid on Christmas morning.

P1040338I set my new record for getting dressed and eating, and awaited the bewitching hour. Kim, Mary and Tracy showed up about 8 o’clock, and about 20 minutes later virtually every physical and occupational therapist on my floor entered my room carrying a large banner.

3

They unfurled it, and in giant letters it said, “Congratulations Tom.”

IMG_4188All the nurses and therapists on the floor, along with a few others who had helped me get better along the way, had signed the banner…

IMG_4190…which I put up in my Sports Room as soon as I got home.

IMG_4185I was sick of crying by this time, so I stood up (and nearly fell over) and hugged all of them.

4One of them said, “Tom, you know you are a miracle, don’t you?”

Yes, I did, and I promised to make a return visit (walking) by the end of January before one my therapists headed to Seattle.

Just as I had with the nurses on different floors and the doctors who had treated me, I was really sad to leave this group of people.  They never once gave up on me, were relentless in their endeavor to get me better, and, best of all, they were all incredibly nice.  I still think of them often as I shoot baskets in the backyard.

5Then it was into the wheelchair and down to the car…

P1040398…we had practiced getting in the day before so I didn’t face plant in the parking lot).

P1040402Just seeing my house again was overwhelming, and walking through that front door (carefully), which on so many evenings in the hospital I thought I would never see again, was a sight to savor.

7                                                            8

The dogs greeted me and tried to knock me over (some things never change).

9Our tuxedo cat ran and hid from the skinny guy who just walked in the house, but there was no sign of my beloved little rescue tabby cat (they were all rescued, but my tabby is a special case).

IMG_0100I sat in the living room, thanked Kim and Mary for all they did the past three months (over and beyond the call of duty), hugged Tracy for being the greatest wife a guy ever had and then looked at the stairs leading up to our bedroom. Slowly walking down the stairs was a little tabby, curious as to whom this “new” guy in the house could be.

It took about an hour, but as I sipped on a soft drink, I felt a little tail hug from a very cute, orange tabby cat.

I was finally home.

P1040209Epilogue  & Random Thoughts:

The first thing I am going to write about has been on my mind for years and is still unexplainable (to me anyway).

Mysterious Michael – Real person, figment of my imagination or a true Guardian Angel, Michael is the biggest mystery of my entire stay in the hospital, including the diagnosis. He was instrumental in keeping me sane, yet nobody knows him or knows of him.

October through early November was a brutal time for me (and anyone visiting me). I would slip in and out of consciousness, and when I was conscious my mind would often have crazy notions running through it thanks to Mr. Steroids. I don’t remember exactly what those thoughts were, but I do recall these episodes seemed to heighten during the middle of the night when I was unable to sleep or go back to sleep.

During this time, I was visited a handful of times by a young, black gentleman by the name of Michael. To the best of my recollection, he worked at the hospital but was going to school during the day to become a nurse. He had either talked to someone about me or read about my case.

Michael was an incredibly calm guy who would spend upwards of half an hour listening to my plight, offering words of encouragement and generally calming me down. When he would leave, he would always say, “I’ll keep up with your case and visit you again soon.”

I wasn’t always an easy guy to find, either. While some people have frequent flyer programs, I had a frequent floor change program. However, no matter what part of the hospital I was transferred to, for the better part of two months Michael would find me and stop in late at night to chat. He was my own private late night talk show host. He was one of the nicest persons I have ever met, and my conversations with him were invaluable.

After awaking from surgery, I hoped I could visit with Michael now that I was back to a semblance of normalcy. After a week or so, he had not shown up so I asked one of the nurses if she knew how I could get in touch with Michael.

She and every subsequent person gave me the same answer, “I don’t know anyone named Michael.” I specifically asked the night nurses who had been on duty some of the times Michael showed up in my room, and no one remembered ever seeing him. Tracy, Mary and my sister knew just about everybody who had ever talked with me, but they had never met Michael.

According to Tracy, I did not mention him to her after our late night tête-à-têtes, yet I can remember his voice and his visits as I write this as if I talked to him ten minutes ago. I was really hoping to thank him before being discharged, but no one could ever figure out who he was or where he worked. Tracy said to me the one day when I was talking about Michael, “Maybe he is your Clarence (It’s A Wonderful Life).”

I don’t know if there really was a Michael, or if he was someone who I invented in my mind to keep me from going insane on the worst nights. I do know one thing, if he was my Guardian Angel; he did a damned fine job. To paraphrase George Bailey after Clarence got his wings, “Attaboy Michael!”

Tracy –  Speaking of angels, I was lucky enough to marry one. When she took the vow “for better or for worse,” I doubt she could have imagined anything “worse” than this mess I got us into. For 105 days, she was there each and every day without fail. She served as my advocate, making sure I was given the best care possible. She was my sounding board for all my trials and tribulations. And she gives a mean foot rub (I think there was a sign on my door that said, “To enter this room, you must give Tom foot rubs”).

There would not be a chance in the world I would be alive today without the love she showed during this period and her perseverance to make sure the right decisions were being made each step along the way.  She slept on uncomfortable chairs, in window seats that would barely accommodate our Corgis and, no matter what stupid request I made (coffee ice cream in the morning), she never seemed to be upset with me. As a matter of fact, during my entire stay, I don’t believe she ever gave me “the look” one time, although I am sure she gave me more than a few in her mind.  Tracy would help the nurses flip and turn me when…as Elvis Costello would say… “Accidents Will Happen.”  She never complained about having to take care of me, but I could see how tired it was making her. I am one lucky man.

Mary –  What can I say? Without Mary, Tracy might have soon have been in an adjoining room. Mary would come up and stay for a week or ten days at a time and spell Tracy on “Tom Watch” and let Tracy get some air and do other things besides worry about me every minute.  Mary also had to listen to my crazy ramblings, but she was used to that since I was the third wheel on Kim and Mary’s second date back in the mid-70s. She will always have my undying (pun intended) thanks.

Deanna – I guess if there is a positive that came out of this (besides the living through it part) is that my sister and I became much closer during my illness.  Mary and Tracy played the good cops with the doctors and nurses, while Deanna (a former RN) played the bad cop on occasion to make sure I got what I needed. When she thought I was not getting the right care, she knew exactly who to talk to and get matters straightened out in a hurry.  My sister and I had a number of good talks during those three months (well, she did most of the talking), and it was really nice to connect more with her, although I wish we could have done it over a nice dinner and some wine instead.

Doctors and Nurses – Say what you want about health care in America, but I certainly was fortunate to have an incredible team of doctors and nurses.  For the most part, my nurses were cheerful and helpful, and they helped me through some of my darkest hours.  I went back to the hospital a month after my stay, and I visited many of the floors I stayed on during those three-plus months. Invariably, one of the nurses would come up to me and say, “Mr. Maitai (not my real name), I’ve never seen you stand up. I didn’t know you ere that tall.” Or, “Tom, you are a miracle. We talk about you all the time.”  I hoped that was a good thing.

My doctors were nothing short of amazing. Some people I know say that they should have found out earlier what my problem was, but medicine is a tricky business. None of these people wanted me to die (as far as I know), and they all worked diligently to keep me from an early appointment with the Grim Reaper.  I thank my lucky stars every day I was able to have “Team Tom,” and that they never gave up on me!

Dialysis – I would imagine that somebody reading this is on dialysis.  To me, this was as frightening as anything I went through in the hospital.  I have a friend who goes to dialysis three times a week, and I don’t know how she does it.  For me, when they told me I would be having a dialysis treatment that day, I would get the shakes.  My kidneys shut down twice, and when they shut down the second time, my kidney doctor was sure that they would never recover. She thought I would be on dialysis for the remainder of my life. I don’t know what it is about dialysis, but when it was going on I felt like I wanted to crawl out of my skin. The only thing that saved me was the guy who administered my dialysis. He had a voice that sounded exactly like Peter Coyote, soothing and calming. When I would sit up and want to run out of the room (like that was possible anyway), he would gently say, “Put your head back down Tom, it won’t be that long until it is done.”  Fortunately and quite remarkably, my kidneys came back a second time, and I no longer need dialysis, for which I am quite grateful.

Hair – A couple of weeks after I got out of the hospital, I realized my hair had not grown at all since my hospital haircut. I also noticed some bare spots on my head. It looked like a lumber company had been clear-cutting my hair. “Crap, I’m going bald,” I said to Tracy. (photo from last day in rehab…nobody told me about that damned bald spot).

2I had an appointment with my dermatologist that day (I keep doctors all over Southern California wealthy), and I told him about my hair dilemma. He happened to notice the testosterone patch I was putting on my back each day per doctor’s orders, and he said, “You know, that could be the cause of you losing some hair.”  Well I ripped that damned thing off faster than you could say Telly Savalas.  Then in a Billy Crystal as Fernando Lamas moment, I uttered, “It’s better to look good than to feel good.” The hair came back slowly, but surely.

Friends – I can’t say enough times how lucky I am. During my incarceration, I had innumerable friends stop by to see me, although sometimes I wasn’t well enough to see them. Their love and support also helped me get through this ordeal, and without them it would have been a lot tougher to endure.  Sometimes their visits reminded me of an episode of Laugh-In when guest stars would pop in and out of those little cubbyholes. I would be lying in bed and all of a sudden one of my friends would just show up in my room. I knew many of them weren’t just in the neighborhood, because they lived a number of zip codes away.

Diagnosis – I guess the best answer is that we will never really know what caused all of this. Pneumonia probably started me on my downward spiral, but then it was just one event after another that triggered my body’s near demise. Ultimately, it was the fixing of the heart that turned the trick, but up until then it was what we ultimately called “The Perfect Storm” that left me in such bad shape.  I have been asked if it bothers me that there is not a definitive reason I got so sick. I tell them, “Not at all. I lived, and that’s all that matters to me.”  My arthritis doctor would not let me go back on Enbrel (as much I pleaded with her, since it had worked so well for me), but I am on a new drug that works almost as good, but has somewhat lesser risks (but they all have risks…arthritis patients are very aware of that fact…or should be).

Body – I gained 22 pounds in the first three months out of the hospital. Instead of The Jenny Craig Diet, I sustained myself on The Cheese Enchilada Diet. I should have stopped there. Now, five years later…I need to lose weight again (although not like I did in 2010), and I have Jenny Craig back on Speed Dial.  Physical therapy was brutal, yet necessary if I hoped to get back to my “1,000 stairs a day” vacation routine. It took three months for me to shoot a basketball, and that was from only one-foot (and I have the photo to prove it…yes, I made it).

P1000190Since then I have set my personal best of making 86 straight free throws (not bad for a guy in his 60s).

I slept a lot the first couple of months…

IMG_0168…but the dogs took turns taking care of me.

FrankieFinal Thoughts – I end all my trip reports with “Enjoy The Journey. Attitude Is Everything.”

On this one, I must say I didn’t particularly enjoy the journey, but attitude is still everything. Even during my darkest moments, those times when I thought I might not make it back home, I would suck it up and tell myself over and over again, “You are not going to die. You are not going to die.”

Before my heart surgery that November, Tracy talked with my good friend Bob, who I have known since we were seven years old (and who has sadly since passed away). She told him that I might not make it. In effect, Bob told her, “Tommy will not die. He is too much of a competitor to let that happen.”  Personally, I don’t know if you can will yourself the strength to live in these circumstances, but I will say this; it damned well doesn’t hurt to try.  Like Jim Valvano said, “Don’t give up! Don’t ever give up!”

image001So if you take anything out of all of these ramblings; if you ever find yourself in a similar position (and I surely hope you don’t) try to maintain a positive attitude, have as many advocates working for you at the hospital as possible and, most importantly, make sure you married the right person.

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Down The Rabbit Hole & Back: MaiTaiTom’s True Near-Death Saga — 1 Comment

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